Ontario woman aims to end stigma of Alzheimer's disease

Susan Parish is determined to shatter the stigma that hangs over people living with dementia.

Informed at just 59 that she has posterior cortical atrophy -- one of the rarest forms of dementia -- the Lindsay, Ont. resident was afraid of how it would change her life and affect her family and friendships.

Instead of sitting at home to “mourn,” Parish decided to go public, pitching a story about her disease to the local newspaper.

“I felt I would be more comfortable making mistakes or doing something silly amongst people who would know me. I wouldn’t be totally by myself,” said Parish, now 62.

In taking that gutsy step, the retired nurse helped her neighbours become more aware and tolerant of those who might be suffering from dementia.

In an effort to spread similar awareness about the disorder and those it affects, the Alzheimer Society is launching a nation-wide campaign called “See me, not my disease.”

According to a recent poll by Alzheimer’s Disease International, 40 per cent of people with dementia reported they had been avoided or treated differently after diagnosis. One in four respondents cited stigma as a reason to avoid divulging their diagnosis.

Over 740,000 Canadians have dementia and that number is expected to double to 1.4 million in the next 20 years.

The progressive brain disorder affects each person differently. Right now for Parish, it means she is unable to complete certain tasks, such as pushing the buttons on a debit machine at a store.

Business owners in Lindsay say Parish opened their eyes to the effects of the incurable disease.

“Before, I think it was something you just wondered, ‘What was the problem?’” said Jake Norris of the Pita Pantry in Lindsay. “But now you’re a little more patient with it, you take more insight into what the problem is.”

Mary Schulz, director of education at the Alzheimer Society of Canada, says Alzheimer’s is often misunderstood, and sufferers are vulnerable to being stereotyped.

“When a person is diagnosed with dementia we automatically think that that diagnosis makes them immediately completely incapable of doing anything or being the same kind of person that they have been all their lives,” she said. “That is a myth.”

The society says there are many ways to help change societal attitudes toward dementia, including learning the facts of the disease, avoiding making light of the condition, and maintaining relationships with people with dementia, especially as the disease progresses.

Today, Parish credits her husband Brian and two daughters, as well as caring and informed friends, for being her lifeline.

She is living life to the fullest, travelling to the Mideast, Central America and East Africa with her husband.

She speaks regularly on behalf of the Alzheimer Society chapter in Lindsay, and has been advocating along with the society for smaller nursing homes similar to those in Denmark. Her goal is to work with the Alzheimer’s Society to make more communities in Canada “dementia-friendly.”

Parish is urging the government for a national strategy to address “this tsunami of people” who will face dementia.

“The whole country should be understanding what Alzheimer’s is and what it means to deal with it and live with it,” Parish said.

“We are living with Alzheimer’s, we’re not dying from it.”

With a report from CTV’s medical specialist Avis Favaro and producer Elizabeth St. Philip

Photos

Susan Parish, diagnosed with a rare form of dementia at just 59, wants to remove the stigma associated with dementia.

Susan Parish, diagnosed with a rare form of dementia at just 59, wants to remove the stigma associated with dementia.